What It's Like: One family's A-Z journey through Autism

Disability rights

I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man. Since she passed him in the exact same spot for three years her curiosity finally got the best of her . You can see it here. He was thin, unshaven, filthy. We’ve all passed “him” on the side of the road, haven’t we? Remember the Man-With-The-Golden-Voice several years ago who hung out by the highway and became a media sensation? I passed him…sometimes twice a day on the way to my child’s school. There he was–all wild haired and looking strung out. And then there he was on Dr. Phil with a Cliff Huxtable sweater and a haircut. A former radio announcer who succumbed to addiction. We were all cheering him on–he had a Golden Voice and would contribute to society with those gilded vocal chords. And my, wasn’t he handsome with that haircut? He could practically be someone we knew!

I digress. This woman from Texas stopped to ask this man why he was always in the same spot all day, every day. He told her he was waiting for his mother because that is where she left him.

He was waiting for his mother. Right where she told him to wait for her.

To be sure, his mother was not coming back and this man struggled with mental illness. But maybe she really did leave him right there the last time he saw her. This could very easily be my beautiful boy.

Let me give you some background on this….

What you might not know is that he didn’t suffer from mental illness…that came later in life. He also had Autism with a speech disorder and a learning disability. He was raised in an affluent suburb with the best schools in the state but they failed to teach him to read. This man’s parents were older when he was born, were highly educated, had good jobs and didn’t retire until they were forced to. His grandparents were all elderly and required care themselves. His father had excellent medical benefits at work that covered most of his care and his mother was extremely resourceful and was able to access everything available from funding to therapies to alternative treatments. This man’s parents saved as much as they could and because of his unique needs, his mother could not work full-time. Care for a disabled child is a commodity. In childhood, the man’s parents tried to give him the most enriching life possible with as much exposure socially as they could. He found so much joy in being out in public going to sporting events, concerts, religious congregation events and festivals. His parents looked at spending money on these activities as investments since staying at home did not provide him with any social opportunities at all. After he was about four years old, there were no more parties or play dates or neighborhood shenannegans. His parents were his best friends and gave him a life outside of the house.

This man was once an exceptionally adorable little boy and it was so easy for him to get attention and love almost anywhere he went. That is, all the way up until adolescence. It became confusing to him when people didn’t respond in the same way when he would wave at them and say “hey!” or approach their table in a restaurant just to say hello. His parents put off making a trust because the idea of appointing a guardian was so daunting. How do you ask someone to make sure your child is OK for the rest of THEIR lives? How do you ask them to make sure that child has a guardian beyond THEIR lives as well? Given his parents became increasingly socially isolated as he grew older, it was hard for them to even consider options. So they just didn’t and hoped for the best.

The boy grew into a man and it was important to his parents that he felt like one. They insisted he held a job and helped him find work wherever they could. As they grew older, their health issues became too much for them to be able to continue to change diapers or physically help move the man to safety when he got upset and ran in the direction of danger. The man’s health care waiver ran out when he turned 22. Reluctantly, his parents dipped into their accounts for his care and in less than 5 years, they ran through their life savings. The same amount of money that would have been considered sufficient in any other situation in old age. The parents did everything right. The man worked hard his whole life to be the most contributing member of society his parents could push him to be. And yet…..one day on the way to a doctor appointment, the mother asked the man to wait outside. She was afraid that if the doctor saw she was trying to care for an adult with a disability he would be taken away…taken away to live in a substandard long term care facility…one that was short staffed where he would be living with strangers. The Medicaid cap would release him to the streets when it ran out. Well…frankly, it was better to let him wait outside, she must have thought. That is until at that doctor appointment he determined she needed surgery immediately because all the nausea she was having recently turned out to be repeated heart attacks due to a blocked artery. Only she didn’t make it in time to let anyone know her beautiful boy was waiting on the curb for her.

And there he sat for 3 years. Wandering for food. Wandering for help, but due to his speech disorder and illiteracy, there was no one who understood him enough to know who he was or what he was looking for. He looked crazy. He looked drunk. He sat and wandered until that nice lady finally stopped to ask him who he was.

This could be my son. My beautiful boy. The kiddo who is 11 years old right now. Of course, it is not. I actually know nothing about this man from Texas or his background. But I certainly can imagine this very real scenario. It is a scenario that keeps me up at night with the exception of the kindly stranger and the happy ending on channel 10. For those of you who believe people who live off the system have made their lot in life or that they are owed nothing…is this who you picture when you see the guy sitting on the side of the road? Because that guy may have once been my beautiful boy….your white, upper middle class neighbor’s child who you thought was a ‘cool little dude’. Where do you think those kids go when they have no one? (and if one more affluent person who knows my child says “well….THAT’S different” be prepared to introduce me to someone else you know milking the system. Go ahead…I’ll wait right here.). Because you personally know me and because you personally know him and we kind of look like you does not make him more deserving than the dirty adult sitting on the curb you think you have never seen before. That guy that is owed nothing. You just don’t recognize him because you keep your eyes on the road.

I don’t think…I KNOW that one day I will die. Unless I sell my soul to the devil, I am not sure how I will manage to work a steady job through my own elderly death that will happen AFTER his . I keep reading how his care should all be on me. And it most certainly is. And my husband and I have done everything we are supposed to do.

Today. Call your congress people TODAY.

Don’t know who they are? Click here to get the name and contact of your National/State/Local representatives. Don’t know what to say? Pick out the parts of this article that spoke to you the most and read it to them. Remind them that NO ONE is a throw away person….not any of their constituents. Not even the ones that cannot vote.

Stop what is happening with the repeal of ACA. $800 BILLION cuts in Medicaid are going to be made for tax cuts to people who don’t really need those tax cuts. Medicaid will come in block grants to states with caps….and those caps come quick. Where will my baby go when he meets his cap? 1 out of every 6 children have a disability and many of them depend on their families to ensure the bulk of their care and with Medicaid to help where they cannot. I have split my time between working and paying taxes to the country I am asking to help and also providing his care. What happens when my child is not in school and needs full time care? How do you keep a job and ensure your commitment as a tax payer while also fulfilling your duty as a parent of a disabled child? If I don’t have a job, he is a freeloader. If I do have a job, I am a freeloader AND negligent. The circular logic for the reduction of assistance and subsidies is just that ridiculous.

I am glad to hear that man from Texas is doing well. I am glad there are middle-class individual citizens out there who might stop their cars to find out how they can help. This, however should not be my son’s disability policy. His life is worth more than a sound byte on the local news.

I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man. Since she passed him in the exact same spot for three years her curiosity finally got the best of her . You can see it here. He was thin, unshaven, filthy. We’ve all passed “him” on the side of the road, haven’t we? Remember the Man-With-The-Golden-Voice several years ago who hung out by the highway and became a media sensation? I passed him…sometimes twice a day on the way to my child’s school. There he was–all wild haired and looking strung out. And then there he was on Dr. Phil with a Cliff Huxtable sweater and a haircut. A former radio announcer who succumbed to addiction. We were all cheering him on–he had a Golden Voice and would contribute to society with those gilded vocal chords. And my, wasn’t he handsome with that haircut? He could practically be someone we knew!

I digress. This woman from Texas stopped to ask this man why he was always in the same spot all day, every day. He told her he was waiting for his mother because that is where she left him.

He was waiting for his mother. Right where she told him to wait for her.

To be sure, his mother was not coming back and this man struggled with mental illness. But maybe she really did leave him right there the last time he saw her. This could very easily be my beautiful boy.

Let me give you some background on this….

What you might not know is that he didn’t suffer from mental illness…that came later in life. He also had Autism with a speech disorder and a learning disability. He was raised in an affluent suburb with the best schools in the state but they failed to teach him to read. This man’s parents were older when he was born, were highly educated, had good jobs and didn’t retire until they were forced to. His grandparents were all elderly and required care themselves. His father had excellent medical benefits at work that covered most of his care and his mother was extremely resourceful and was able to access everything available from funding to therapies to alternative treatments. This man’s parents saved as much as they could and because of his unique needs, his mother could not work full-time. Care for a disabled child is a commodity. In childhood, the man’s parents tried to give him the most enriching life possible with as much exposure socially as they could. He found so much joy in being out in public going to sporting events, concerts, religious congregation events and festivals. His parents looked at spending money on these activities as investments since staying at home did not provide him with any social opportunities at all. After he was about four years old, there were no more parties or play dates or neighborhood shenannegans. His parents were his best friends and gave him a life outside of the house.

This man was once an exceptionally adorable little boy and it was so easy for him to get attention and love almost anywhere he went. That is, all the way up until adolescence. It became confusing to him when people didn’t respond in the same way when he would wave at them and say “hey!” or approach their table in a restaurant just to say hello. His parents put off making a trust because the idea of appointing a guardian was so daunting. How do you ask someone to make sure your child is OK for the rest of THEIR lives? How do you ask them to make sure that child has a guardian beyond THEIR lives as well? Given his parents became increasingly socially isolated as he grew older, it was hard for them to even consider options. So they just didn’t and hoped for the best.

The boy grew into a man and it was important to his parents that he felt like one. They insisted he held a job and helped him find work wherever they could. As they grew older, their health issues became too much for them to be able to continue to change diapers or physically help move the man to safety when he got upset and ran in the direction of danger. The man’s health care waiver ran out when he turned 22. Reluctantly, his parents dipped into their accounts for his care and in less than 5 years, they ran through their life savings. The same amount of money that would have been considered sufficient in any other situation in old age. The parents did everything right. The man worked hard his whole life to be the most contributing member of society his parents could push him to be. And yet…..one day on the way to a doctor appointment, the mother asked the man to wait outside. She was afraid that if the doctor saw she was trying to care for an adult with a disability he would be taken away…taken away to live in a substandard long term care facility…one that was short staffed where he would be living with strangers. The Medicaid cap would release him to the streets when it ran out. Well…frankly, it was better to let him wait outside, she must have thought. That is until at that doctor appointment he determined she needed surgery immediately because all the nausea she was having recently turned out to be repeated heart attacks due to a blocked artery. Only she didn’t make it in time to let anyone know her beautiful boy was waiting on the curb for her.

And there he sat for 3 years. Wandering for food. Wandering for help, but due to his speech disorder and illiteracy, there was no one who understood him enough to know who he was or what he was looking for. He looked crazy. He looked drunk. He sat and wandered until that nice lady finally stopped to ask him who he was.

This could be my son. My beautiful boy. The kiddo who is 11 years old right now. Of course, it is not. I actually know nothing about this man from Texas or his background. But I certainly can imagine this very real scenario. It is a scenario that keeps me up at night with the exception of the kindly stranger and the happy ending on channel 10. For those of you who believe people who live off the system have made their lot in life or that they are owed nothing…is this who you picture when you see the guy sitting on the side of the road? Because that guy may have once been my beautiful boy….your white, upper middle class neighbor’s child who you thought was a ‘cool little dude’. Where do you think those kids go when they have no one? (and if one more affluent person who knows my child says “well….THAT’S different” be prepared to introduce me to someone else you know milking the system. Go ahead…I’ll wait right here.). Because you personally know me and because you personally know him and we kind of look like you does not make him more deserving than the dirty adult sitting on the curb you think you have never seen before. That guy that is owed nothing. You just don’t recognize him because you keep your eyes on the road.

I don’t think…I KNOW that one day I will die. Unless I sell my soul to the devil, I am not sure how I will manage to work a steady job through my own elderly death that will happen AFTER his . I keep reading how his care should all be on me. And it most certainly is. And my husband and I have done everything we are supposed to do.

Today. Call your congress people TODAY.

Don’t know who they are? Click here to get the name and contact of your National/State/Local representatives. Don’t know what to say? Pick out the parts of this article that spoke to you the most and read it to them. Remind them that NO ONE is a throw away person….not any of their constituents. Not even the ones that cannot vote.

Stop what is happening with the repeal of ACA. $800 BILLION cuts in Medicaid are going to be made for tax cuts to people who don’t really need those tax cuts. Medicaid will come in block grants to states with caps….and those caps come quick. Where will my baby go when he meets his cap? 1 out of every 6 children have a disability and many of them depend on their families to ensure the bulk of their care and with Medicaid to help where they cannot. I have split my time between working and paying taxes to the country I am asking to help and also providing his care. What happens when my child is not in school and needs full time care? How do you keep a job and ensure your commitment as a tax payer while also fulfilling your duty as a parent of a disabled child? If I don’t have a job, he is a freeloader. If I do have a job, I am a freeloader AND negligent. The circular logic for the reduction of assistance and subsidies is just that ridiculous.

I am glad to hear that man from Texas is doing well. I am glad there are middle-class individual citizens out there who might stop their cars to find out how they can help. This, however should not be my son’s disability policy. His life is worth more than a sound byte on the local news.

As Kelly knelt on the floor folding her lighting equipment into her duffel, she looked up at me and said in earnest, “I feel like we have to do this fast. These stories need to get out now.” I felt the sick sink in my stomach because I knew she was right, but we just got started.

I half jokingly refer to Kelly as “my photographer” only because “this girl who agreed to come along to take the photos of interviews I am doing for this idea I had and had no idea what she was getting into” sounds lame..and lengthy. Plus her quiet role moving about the room with the important strangers who agreed to bare their souls to me for two hours gave them legitimacy. What do you call the person who helps provide authenticity to an experience? I don’t get to own that part.

Kelly bore witness to a world she knew nothing about three months before she spoke those words to me in an Airbnb in Dallas, Texas. I met Kelly randomly through a friend the previous summer at a concert. She was a confident, ticketless passenger on the way to a sold out show and found a scalper feet from the venue. I appreciated the cajones and thought she might be someone I would want to know. I did not realize that five months later, on January 27, 2016 we would be sitting for our first interview of a few dozen across the country.

We officially started a whole year ago as of today. Happy anniversary Kel.

Words like inclusion, rights, entitlements, supports are finally part of every day vernacular but even by definition imply separatist “us from them”mentality and leave out the miles of mountain range between the first mile and the last. But to me, those words felt like more than just a start.

When I got up off the pavement a year ago, I believed society and disability subculture were starting to speak some of the same language. I also believed that some of the narratives were getting further and further apart causing a rift within the movement. The time felt ripe to help normalize the experience of being disabled in a way that was not out of pity but rather in a way that lit up the path to be traveled. It was time to assume that folks were coming from a place of not knowing and not from a place of not caring. My personal mental exhaustion was not about my child or his disability, but the wholly unnecessary loneliness, barriers and misunderstanding by the world around us. How off the hook is it I believed changing the world around us would be simpler and more empowering than kicking those pebbles out of the path one at a time?

At the time, not so hookless. I gave a TEDx Talk about the first step in climbing the mountain of disability advocacy as a society. The itty-bitty baby steps of encouraging the general public to lay down misconceptions and engage in discourse with someone who is disabled. I encouraged people to unabashedly just ask about things they don’t know. I called upon the disabled and their caregivers to collectively lift the stigma of living with disability by being honest and non-defensive in talking about what it’s like and what they need. I traveled the country and spent hours and hours recording and photographing and connecting to regular people in extraordinary circumstances to put into pages and immortalize moments on glossy paper for them. I shined up a little piece of the internet for myself under a pen name to create and share in the most balanced way I could. People were believing in what I was saying. People were hopeful. I changed minds. Momentum. Or so I thought.

Through this process, I held the value of neutrality and being non-partisan. Everybody’s story resides in the same place within them regardless of the story’s beginning, middle or end. Allowing people to tell their story while providing them with unconditional positive regard served as a catharsis for both myself and my interviewees. I found it was not difficult to empathize with people whose world I didn’t fully understand or framework I did not fully agree. In social media, I shared stories of injustice or cruelty without solution or politics. Awareness is the first step of acceptance…it is not the end result.

Alas, I am not an advocate. I am a storyteller.

One year later, I am sitting at the same desk but in a very different place. I feel scared. Was I was horribly wrong about this genesis of readiness for change? It has been a challenge to remain non-partisan especially in a time when it seems that perhaps these stories sink to the bottom of the advocacy pile.

The other night as I sat hunched over my computer trying to put a cap on my 1 year experience, I tearfully told my husband we are beyond storytelling at this point. I am fearful of having too much opinion out of concern of not holding my neutral credo for the greater good. It goes against my nature as a social worker. There is a war going on between human rights, human entitlement and government in a narrative that is getting louder and undeniably self-serving to each individual yelling. This goal of reasonable human rights only has a matter of time before we are splintered into pieces again and we are fighting against each other get what we need. It is hard to see where or how this will end right now. Issues that are truly a big deal today may seem like the good-ole-days in the near future. I worried about the juxtaposition of storytelling in an ocean of endless islands of stories. I was feeling disheartened and selfish that evening that this project was down the tubes.

Instead of walking away like he might during a moment like this, my husband turned and said “What if this is about change for the better after all?” He went on to contemplate the lack of passion and purpose as a whole in this country in our lifetime. The things that divide us and crawl under our skin has created less listening and more waiting for our turn to talk. Or worse yet, NOT waiting for our turn to talk and yelling over the opposition instead. He optimistically reframed this unprecedented business-as-politics as the catalyst of the birth of this generation’s common cause. The most powerful man in the world and those who surround him believe that there are “alternative facts” leading the rest of us into a state of despair and confusion over the possibility of never understanding what is true or real. This is the stuff of propoganda and crazy-making.

“But…hasn’t that been your truth for years?” my husband asked.

He was right. Those of us who live with oppression in some way or another in this country have been working off the premise of alternative facts for a long time. At least those of us who are caregivers to those with disabilities who may not be able to speak for themselves, we are told over and over to accept half-truths or are simply told “no” for nebulous reasons when asking for inclusion, equality or safety. Or else we are dismissed,discounted or ignored. This is not new. Some of us sink into deep holes of acceptance of this and others of us jump up and down and yell as loud as we can. And sometimes we do both in intervals. It is through this collective place we can pull together instead of being one small group spitting into the wind while down wind from us is some other oppressed group covering both of us in spittle.

“I wonder if there will grow a common one big enough to make the noise it needs to? People as a whole are a lot more awake than they were…and maybe that is not so bad” he mused.

Regardless of what you believe or how oppressed or even how entitled you are, it is time. Listen calmly. Don’t wait for your turn to talk. Take the information you get from other people’s stories and learn from them even if you disagree. Even if you don’t understand. These words may help heal or give you the tools to fight even harder or maybe even change your mind. We can yell as much as we want in the faces of those who don’t want to hear….collectively it may eventually work…but individually, that will not change their minds in a world where people are desperately trying to cling to what they think they believe.

It is time. We all have a story. Kelly can tell you what it is like to bear witness to that listening from behind a camera first hand.